Category Archives: abandoned

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silence

You are silent.

I try a little more but I am tired. I am tired of drama, trauma drama. I dream and dream and dream. I dream that my ex touches a live bat. The bat changes in my dream, from a tiny brown nose bat to a huge fox bat with fur and stripes. It is unconscious.

“Don’t touch it! You touched it! Now we have to take it to the Health Department!” I am eyeing the bat and thinking of throwing something over it. A container. It’s huge.

My ex laughs. “No we don’t.”

“Yes we do! Rabies! It could have rabies! If we don’t take it in, you’ll need rabies shots!” Poor bat, I think, it will be killed to test for rabies.

My ex keeps laughing. “I’m not going to be tested, I won’t have shots, and the bat is fine!”

“WHAT!” I say, “No, you could die!”

I wake up. What was that dream about? Oh. It’s about you, refusing to test for Covid after being exposed. You said you would hike with me. “Not if you won’t test,” I say, “I can’t afford to get Covid again, I can’t be around you for 15 days if you won’t test.”

And you go silent.

And I try a little more and I let go. You will have to break the silence if you plan to keep your promises. Will you or won’t you? I am supposed to trust you. But people say trust me, and then sometimes they are drunk, and lying, and you can’t trust them. “I will never hurt you,” is a lie. Try this instead: “I will try not to hurt you and I will listen if you feel hurt.” And change, maybe?

Maybe.

________________

Dreams are funny. Fox bats ARE the largest bats in the world, but they do not have stripes: https://allthatsinteresting.com/giant-golden-crowned-flying-fox.

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A Good Reaction 2

I am still working my way through my immune response to an influenza shot and six days later, my Covid-19 booster.

I am kicking myself a bit for having them that close together, but at least my immune system responds. I think my immune system takes a shotgun approach and raises ALL the antibodies, and since I most probably have some antibodies that attack my own tissues, it’s not terribly much fun. I’ve had to put pulmonary rehab on hold until my fast twitch muscles work again. They aren’t working and my slow twitch muscles are very pissed off and stiff at having to do double duty. If I do aerobic things, my rib muscles hurt for two days. THAT feels awful.

The good thing (ha.) is that I am having the antibody response but I do not have pneumonia. The working theory is that I have PANS and antibodies to tubulin. Tubulin powers muscles, including lung cilia. Their job is to clean any trash out that gets breathed in. I am at much higher risk for getting pneumonia while the lung cilia are on auto-immune vacation. I am mostly staying home and masking when I go out. A friend got exposed to Covid-19 and refused to test at day five. Well, ok for him, but he could be asymptomatic. So he’s not allowed anywhere near me for at least another ten days. I disapprove of his callousness towards me and others.

Tobacco also paralyzes lung cilia. When I was working I would warn smokers that they might cough more when they stopped smoking, because the cilia would wake up and clean house. “Hey! No one has swept here in years!” A year after quitting smoking, the lung cancer risk drops almost to that of a non-smoker, because those cilia clean house. Isn’t THAT cool?

I don’t know how long my fast twitch muscles will be screwed up. With the last pneumonia, it was nearly a year before the antibodies finally went down. I woke one morning with my slow twitch muscles insanely stiff and my fast twitch back but weak as a newborn kitten. My slow twitch muscles were yelling at my fast twitch: “Where have you BEEN? We’ve been doing YOUR WORK!!” My fast twitch were confused, weak and surprised. I could barely walk down my stairs that day.

Even so, I am lucky. I have a version of chronic fatigue, but because only my fast twitch muscles are affected, I can still do stuff while sick. The people who can barely get out of bed, my working theory is that it is both the fast twitch and the slow twitch muscles that are affected.

And then there are the brain antibodies. Ugh. The silver lining is that the antibodies make me a bit OCD and a bit ADHD, so I am organizing the house. I vacuumed the stairs. That sounds trivial except that I HATE the vacuum. I usually use this peculiar cat hair sponge thing on the stairs, but this time I got the vacuum out. I think organizing and vacuuming are hella funny symptoms of autoantibodies.

Here is a blog post by another physician, also about brain antibodies and encephalopathy. Brain inflammation.

https://www.potomacpsychiatry.com/blog/infectious-diseases-and-psychiatric-illness

Great blog post. And the NIH paper on multiple studies of encephalopathy:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6455066/

If I have the energy today, I may try to look up the trajectory of antibody rise and fall after immunization. My brain tells me somewhere between 6 weeks and 6 months, pulling old data from somewhere, but I took immunology classes when I was working at the National Institutes of Health (late 1980s) and in medical school (early 1990s), so there may be new information. Science changes. I am hoping for less than six months really, and meanwhile trying not to get pneumonia.

Blessings and peace you.

I took the photograph in 2021, while I was REALLY sick. Glow in the dark Zombies stealing the cat food. I have to entertain myself somehow when I have pneumonia.

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only when I’m hungry (1)

sometimes
I still miss you
then I have to check
if I am hungry

I’m doing well, you see
I only miss you when I’m hungry

I’m moving on
but sometimes I still get hungry

hunger is tied up with fear
in childhood
and grief and abandonment

When you fed me
that was huge

You don’t feed me any more

Sometimes I still miss you
but only when I’m hungry

I think you’ve joined the dead
the angry dead
who didn’t feed me
and didn’t love me

or loved me during anger
and wouldn’t feed me

Sometimes I still miss you
but only when I’m hungry

________________

Photo taken by my friend JB.

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lair

alone and sad
lurk in your lair
information
rotting there

you say you read
what I write
but not what or when
or day or night

collect words
webbing glue
word mummies
stick to you

you don’t connect
you don’t share
you say you never
never care

your web is touched
vibrates fast
fangs extend
webbing cast

you bite your victim
in spite of screams
anesthetize
steal their dreams

I ask questions
you scold me coldly
I break the web
fight poison boldly

read my words
as you will
I’ve escaped your web
as others will

your web is old
you’re growing slow
your poison fails
your victims know

you end alone
sag sagging web
your victims glad
when you are dead

___________________________

A second darker take on the Ragtag Daily Prompt: dream world.

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A lovely irony

it’s a lovely irony
in losing you I’m finding me
in grief I am at last set free

you may call or not any day
ask me to the beach to play
it doesn’t matter anyway

you’ve lost me, you know it must be good
things happen as we know they should
lost the beaches lost the woods

I’ve found the lover I’ve sought so long
you don’t believe me and you are wrong
the Beloved’s love is deep and strong

I say a loving goodbye my friend
I am sad to lose you, sad hearts mend
but you have chosen to make an end

it’s a lovely irony
in losing you I’m finding me
in grief I am at last set free

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hope molting and growing new feathers

A friend away a friend some day
a friend can’t stay all the day
a friend won’t pray a friend can’t play
not today is what they say
a friend they say a friend always
a friend who may return some day

in a way you might say
hope molts and regrows feathers today

I think my inner four year old wrote today’s poem. I am thinking about the song my mother taught me, very young, for when I was frustrated.

My sister and I loved this song and others, Samuel Hall and “I don’t want to play in your back yard, I don’t like you any more. You’ll be sorry when you see me, sliding down my cellar door.”

I gave a young friend a book of rhymes. He looked at me with some horror. “These are nursery rhymes.” I grin at him. “Look again. It’s a book of insulting playground rhymes, suitable for all occasions.” He looked at the book again and held on to it.

The photograph is from the National Museum of Women in the Arts again. Another fabulous painting that seems to fit my theme.

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Autoimmune OCD and my daughter shops my closet

https://www.nature.com/articles/s41398-021-01700-4

The article is a proposal for diagnostic criteria for autoimmune obsessive compulsive disorder, a relatively rare version of OCD. Important because the treatment has to include searching for infection that triggers the antibody response, which in turn attacks the brain. Antibiotics to treat a “psychiatric” disorder. Mind and body connection, right?

The ironic thing about this new proposed diagnosis is that I do not have obivious OCD in any way, shape or form. It is masked by packrat. Also, my OCD is focused. When I was working, it was focused on patients. My clinic charts were thorough, 100% of the time. I was brutally thorough and wouldn’t skip anything. The result was that I got a reputation for being an amazing diagnostician. Usually it was because I wanted ALL the puzzle pieces and the ones that don’t fit are the ones that interested me. They have to all fit. Either the patient is lying or the diagnosis is not as simple as it appears. Occam’s Razor be damned, people can have more than one illness.

In fact, an article 20 years ago looked at average patient panels and said that the average primary care patient has 4-5 chronic illnesses. Hypertension, diabetes, emphysema, tobacco overuse disorder, alcohol overuse disorder, well, yeah. And then the complex ones had 9 or more complex illnesses. You can’t see the person for one thing, because if the diabetic has a toe infection, you’d better look at their kidney function because the antibiotic dose can kill their kidneys if you don’t adjust it. So do not tell me to see the patient for one thing. Malpractice on the hoof. Completely crazy and evil that administrators tell doctors to do that.

No one looking at my house would ever think I have any OCD. I am not a hoarder (ok, books) but the packrat force is strong in me. My daughter did not inherit that gene. She is a minimalist. However, she has come to appreciate the packrat a little.

This summer she said that her purse is wearing out. As a minimalist she has one purse. I ask, “Would you like to see if I have one that you like?” It so happens that as I was trying to recover from pneumonia, a local garage sale had 20+ year old designer purses for $3 each, because the house was going on the market. Got to get rid of the stuff.

“Yes, please.” says my daughter.

I start with the weird ones that I know she will not want. I get eye rolls. But I am progressing towards the purses that are close to the one she has. At last I produce a small leather purse, the right size, in good shape, and she sits up. “Let me see that one.” Like Eeyore with his popped balloon, putting it in a jar and taking it out, she tries putting her phone and wallet in the purse and taking it out. “Yes, I like this!” She calls it “Shopping mom’s closet.” I think it is delightfully comic. The benefits of a packrat mother.

Back to the Nature article and OCD. The diagnostic criteria are gaining steam. Having watched a conference this summer about Pandas and Pans, mine is mild. Some young people have a version where killer T cells invade the brain and kill neurons. I had a moment of panic when the conference was discussing a case, but then I thought, if I had the neuron killing kind I would be dead or demented by now.

Instead, I’m just a little neurologically unusual.